Monday, July 27, 2009

Standing On His Promises

I learned a long time ago that it isn't really fair to be upset with someone and not be willing to tell them about it. If you do you are holding them responsible for something they possibly know nothing about and if you don't give them the chance to explain or perhaps even apologize then you are just as much to blame as they are. I had been holding someone responsible for things and not discussing it with them for a long time. Today, unplanned, the discussion occurred. It was not comfortable. It was not fun. It hurt like hell. But I did it and even though I didn't really get the answers I needed I think I feel better anyway. The truth is I don't think anybody but the Lord above has the answers to the questions I have. So I will keep praying and someday, somehow I will find peace with the situation. My heart will stop breaking. This might not have been the Lord's will but he will make it work for his glory. He promises me he will and I will continue to stand on that promise, he will not fail me.

Sunday, July 26, 2009

No Rest For The Weary

Therapy. That is where I have landed. I have fought it and put it off despite Kenneth's multiple requests that I go. But finally, it became crystal clear to me that this is real and it is not going away. The longer I refuse to face the pain and pretend I am OK, the longer it will take to find some healing. I have pretended for the past 13-14 months since Anna's diagnosis that I am OK for the most part. And I am, some days. Other days I am not. So therapy it is, and I actually left my first session feeling a little better. I look forward to going back this week. Anna had speech on Thursday instead of Monday because Brad (the speech therapist) had strep and was kind enough not to share it with us. Thanks Brad! Anna was much more attentive. We worked mostly on the "b" sound. Anna did not really ever seem to get it during therapy but this morning while I was sleeping she got right up in my face and said "Boo!" I was surprised on so many levels and thrilled to hear the use of the "b." Brad says Anna's main communication will be verbal but that it is going to take us awhile to get there. He is also teaching her signs and she is using those more and more. I think she is starting to get the connection between expressing what she wants and getting what she wants. She has been not sleeping again despite med increases. The other night she was awake for the 3rd or 4th hour and was able to sign to me that she wanted some milk. Her not sleeping is different now than before. Before she would wake and then go back to sleep and wake and go back to sleep all night about every 2 hours. She would be up for about 15-20 minutes each time. Now she wakes somewhere between 1-2am and stays awake until 4-5am. We are exhausted, no doubt, but at least we had a couple of months of sleep instead of the straight 17 months of no sleep we had before. We are handling it OK for now, but I do not know how long that will last. The neurologist's next step is to stop the Tranxene and try Trazadone. I am not sure if I am OK with the Trazadone. I cannot really explain why I am not OK with it, I just have my reservations. We will continue on with the Tranxene and melatonin for now and hope this is just a phase that will pass. At least when she is awake she is happy. I know it could be worse! (But it could be better too!!)

Monday, July 13, 2009


Anna's second speech therapy session was today and did not go near as well as the first one. She was tired and cranky and is cutting another tooth so she was not all to willing to cooperate with Brad, our ST. Last week she was excited and was able to keep her attention focused on "speech" things for almost 30 minutes. Today it was more like 30 seconds of attention for every 5 minutes that passed. It's OK though, she is still only 19 months and I do not expect her to sit still for 30 minutes. Besides that, it is hard work for her and I know it wears her out. Today while she was busy not cooperating I left the living room and went to our bedroom to see if me not being present would help. It did not but as I sat there thinking about how we really should not have to be doing this I got mad all over again. When I learned about the stages of grief in my umpteen million psychology classes it seemed they taught us that the stages were always done in order and that they were sort of "levels" and that once you reached a level you would not be doomed to revisit that level. I was so very wrong. It seems the stages are cyclical and I am curious to find if there is an end to my cycle. It is not that I feel sorry for Anna or myself or our family. It is not that at all. I am happy we are who we are but sad at the same time that we are who we are. I know the Lord has a purpose in all of this and that his hand guides us. I know he does not want me to be sad and I know he does not want me to grieve. But I am human, and so I do. I find myself bargaining and thinking that if someone could just go back and make a better decision or a different decision that all of this would end. Time does not go back though and so here we are, unable to go back and ask for second opinions, unable to bring Anna into this world earlier to giver her a better chance. I have so many questions that I really want answered. They have nothing to do with blame but everything to do with a mother who needs to understand on a scientific level why certain decisions were or were not made. If I can understand things scientifically then I can better make sense of them emotionally. This society prevents that dialogue though. You can't ever ask a doctor why they did or did not do something even if you don't have a litigious bone in your body because doctors always must assume you are out to sue. I think that fear of being sued prevents so much of what needs to be said from actually being said. I just want a rationale for the decisions made- not to judge right or wrong, just to understand better. I need therapy...

Thursday, July 2, 2009

We Are Complete

Done. Officially done. That is the status with child bearing in this house. I am a little sad but mostly relieved. Kenneth and I had some serious talks and just decided the risk is too great for us and for our kids. It was confirmed tonight by Carly that our decision is the right one. She had asked me if you just got a baby when you wanted one or if you had to ask God for one when you pray. As I am not ready to explain sex to my 5 year old I simply told her you just ask God for one and if he feels you need one he will give you one. So her prayer at dinner tonight was not a blessing for our food but rather a plea to God to "please not give my momma any more babies no matter how many times she asks. Amen." She then again reminded me she is "never going to have a baby because I do want want to go away to the hospital for a long long time." It isn't that a 5 year old should decide everything but it is just that her words prove that the emotional toll is just too great. She turned 5 yesterday and I cannot believe it. She had a great party on Sunday with all of her best friends in attendance. She was sure she was already 5 on Sunday because according to her birthday parties only happen on your birthday- makes sense to me. Anna decided to really excel at gymnastics on Monday and jumped out of her crib and landed flat on her face on the floor. I was in the kitchen and heard an unmistakable thud and found her. She developed bruising on her nose and under her eyes and started to scare me with her crankiness as the day wore on so we ended up in the ER having a CT of her head. It was negative thank God and so we headed home. It pays to work at the hospital, we were in and out of the ER quick and that is a rarity. EI came out on Tuesday and evaluated Anna for speech. She will have speech therapy once a week for 4 weeks then every 2 weeks after that until December when we will reevaluate. I really like the speech guy, Brad. He really seemed to know his stuff and seemed genuinely excited to help Anna. He will come to our house and I can only hope Anna can cooperate. The funny thing is that this past week she has really started to talk a lot more. I am excited about that but still know speech is necessary at this point. I had a crazy day at work and do not really expect tomorrow to be any better but at least I won't be in charge tomorrow. I must go to bed now, 5am comes quick...